In the New York Times Style Magazine (12/5/10), there is an excerpt from Allen Shawn’s upcoming memoir, “Twin”, in which he writes about the disappearance from his life at the age of 8 of his twin sister, Mary. Allen, the son of William Shawn, the legendary New Yorker editor, describes how he felt when Mary, diagnosed as autistic, was sent to Sandpiper, a residential school for mentally disabled children. Except for scripted letters and occasional visits, she vanished from the everyday life in Manhattan of Allen and his brother Wallace, leaving Allen disoriented, with a fierce fear of loss and a consuming focus on “truthfulness”. As he puts it, Mary’s “departure from our life was like an unmourned death”. The family rarely referred to her.
Mary is described as inner directed, but also connected to her siblings, showing affection and sometimes joining them in their games. She could be erratic in her moods and not communicative verbally. She is not described as explosive, out of control or a danger to herself or others and there’s no question that in our time, she would have stayed with the family. What happened to Mary is reflective of how children with severe mental, developmental or emotional disabilities were treated in the 50’s and 60’s and her residential placement was no doubt recommended and supported by the professionals who were working with her.
Parents, often bewildered and surely guilty, felt that sending children with disabilities away was beneficial to them and the whole family and it seems that little notice was taken of the impact that such a banishment had on the other children in the family. While it is probable that Mary’s life experience was narrowed and her potential curtailed, the impact on the other children was also profound. Allen didn’t understand until he was an adult that his severe anxiety disorder was directly related to what happened to his sister.
There is currently much more of a realization of what should have been clear - that the normally developing siblings are impacted by the decisions made regarding the child with special needs. Allen’s life experience would certainly have been different if his parents were able to talk about why they sent Mary away and maintain more contact with her. However, in those days such openness would have been extraordinary. More common then, and often now, is the shame and guilt that limits communication.
Today, there are programs available to help brothers and sisters of individuals with special learning, health, emotional of developmental needs. One of the best known programs is Sibshops which provides a framework for siblings to meet with peers and share experiences, feelings and advice. The meetings have a recreational aspect as well and are fun. Many agencies sponsor Sibshops and availability should be checked on the internet.
Perhaps if Sibshops were available for Allen, he would have been spared some of the emotional stress in his adult life. But that wasn’t the style in those days (maybe that’s why this article was in the Styles section.)
I have lead Sibshops and know first hand how liberating and beneficial these groups can be for youngsters with special needs siblings.
In addition, numerous Manhattan, Brooklyn, New Jersey and Westchester families have hired me to meet privately with them to discuss how to help siblings of autistic children. Luckily, today, we recognize the needs of all children in a family.
